Thyroid UK
84,155 members99,134 posts

Hi Guys

i just wanted to introduce myself and say a little bit about my thyroid journey.

I've suffered with a dysfunctional thyroid for over ten years. Sometimes hyper, sometimes hypo, never getting treatment that worked, never feeling well.

Then in March 2015 i sufferered a thyroid storm and went into heart failure.

I've since had my thyroid removed, a cardioversion to reset my heart, three eye operations to combat thyroid eye disease and a full hysterectomy, all caused by my thyroid.

Im now 3 stone heavier, suffer pain and fatigue And have a permanently damaged heart.

I don't convert T4 so I get my T3 on prescription in a limited amount due to cost. My GP and my Pharmasist have both said they will fight for me to stay on Liothyronine, without it I am bed ridden and crippled.

Not sure what the future holds but I know I'm not alone.

Thanks for listening x

3 Replies

I think it is awful that someone who cannot convert levothyroxine into T3 is restricted to the amount of T3 instead of a dose which makes you feel well again.

I am really sorry to read your thyroid history and you've had a very difficult time with a myriad of clinical symptoms. How much T3 are you being given and are you taking one single daily dose?

When you have blood tests they have to be he very earliest possible, fasting (you can drink water). You should also allow a 24 hour gap between your last dose and the test and take it afterwards. Your GP should also do B12, Vit D, iron, ferritin and folate. You have additional problems with TED, heart failure, etc etc.

I think you've been neglected in the past and you weren't diagnosed when you should have been.


Hi Sarah-JaneCollins

So sorry you've had such an awful time. I can imagine the prospect of your t3 being withdrawn is terrifying.

There are many members in the same / similar situation. Your probably aware many source from abroad and self medicate. But even these sources are proving elusive recently.

The situation is desperate and unacceptable.

if you haven't already seem the post for 'Grassroots Campaign Anyone ? For better thyroid treatment' please have a look. It is primarily aimed at the immanent withdrawal of t3. But also at looking at the whole injustice of how the treatment of thyroid patients is often neglected. It sounds like you've got a great gp and I hope he / she can continue to provide the prescription. But we would love your support in any shape or form

Many thanks & hope you stay as well as you can


So sorry you are so unwell Sarah Jane, is there any way you can buy T3 privately to top up your dose? Wish you all the best!


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